Autism support groups

Support groups can provide people with a space in which they can swap stories, share information, ideas and tips to help manage different parts of their lives or simply enjoy being with people who have had similar experiences. Some people find support groups a valuable resource while others have little interest in becoming involved. Support groups can be face to face or internet based.

“It’s good to meet likeminded people”
Several people were involved with support groups and enjoyed meeting up with other people with autism. The groups largely involved meeting socially to do things like 10 pin bowling, going to the cinema or chatting in a pub.

Mary is single and unemployed. She has recently graduated from university and does voluntary work. Ethnic background/nationality: White

But you said you go to the support group with other people with Asperger's.

Yes.

And do you enjoy that?

Yes. I really enjoy it. I go to that one in [town name] and that’s, that’s every week. And that’s for two hours on Monday. I really enjoy there. I mean it was a very small group, there’s eight people there and mainly we just sit round a table. It’s very structured and we just discuss like things we’ve been doing the last week. What we’ve been doing the last week and how we’ve been feeling and we do like exercises about emotions and things which are quite helpful. And then we play a game in the second half and sometimes we go out on outings, which is nice. So I don’t have any like friends. I have not made any, single friends, as in people you see regularly, I just.. well I’ve got I guess they’re sort of acquaintances because I see them very regularly but I just don’t see them outside of the group. So they’re not friends in that sense.

Well, actually, it was actually my mum because she just happened to be in the library and she had read a notice about children and she sort of came up with the idea that that sounds very similar to what Vicky has got, why don’t you just sort of like…? So she went to the meeting and then it sort of, she got to know people and they said, well this person who actually running it, which was [name], said, “We are going to try and set up a pub group.” So they set it up for the older ones. We go down like every month and we sort of like try to do things together as well, like go to the theatre, go to the cinema and things like that. So it gives people a chance to get away from like every day, every day situations and try and have a normal life, if you know what I mean. Like people would go out to the cinema, out to the theatre, but people with Asperger's don’t want to go out. Do you know what I mean? They find it difficult to go out into a new situation. But if they have got somebody there, that has got Asperger's and things like that they gradually realise that they can do things for themselves. Again it depends on the situation because myself, I can actually go and do it. I do it on my own anyway but there are some people that won’t do that, won’t go out because they can’t cope with it.

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Age at interview:

65

Sex:

Male

Age at diagnosis:

62

Background:

John, a former croupier, lives on his own and is unemployed. Ethnic background/nationality: White British.

Do you read much about Asperger syndrome?

No, not a lot, no. I have read a bit. I have seen bits on the internet. There is a chap in [city] set up Aspergernauts. Have you heard of Aspergernauts? There are tons and tons of Asperger's websites isn’t there? Seemingly we get on very well on the internet. I notice that we get on well texting. I keep everybody’s numbers. I know [name]’s number and [name] and everybody’s numbers. And I mean we normally meet, if you are ever in [City] on a Thursday afternoon. At a pub called the [pub] in town. Oh we chose the [pub] purposely because it is an, it could have been made for Asperger's this pub. There is no music, no juke box, no football, no rowdy crowds. Just a very quiet pub where they brew their own beers. It is one of the few in [City]I think that actually brews its own beer. You don’t have to drink alcohol. I just have a Coco-Cola.

Friendly people work there. Some chap, there is a sea captain goes there. A bloke who is the master of one of the ships goes in. Everybody knows who we are. We are quite a big crowd and sit round a table and we meet every Thursday afternoon, from about 3 o’clock onwards, 3 o’clock until we move on, you know. As far as I know we are the only Asperger's group that meets that regularly. Everybody else seems to be… the one in Leeds I think they have difficulty keeping it together and there is one in Manchester. I think they have trouble keeping it together.

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Sex:

Male

Age at diagnosis:

11

Background:

Daniel and Margaret have two children aged 7 and 4. Ethnic background/nationality: White British.

Daniel' Yes something like that. But I had known for a quite a few years that I had Asperger's and I say that because it was like, it took so long to get a diagnosis and everything so obviously I realise now that I am sort of trying to think what it was like then. So I was sort of told, but I didn’t really understand it. And I never really understand it, until up until a few years ago when we started our own support group. …

Margaret' He still struggles with some bits of it now.

Daniel' The main thing is because I have met so many other people with Asperger's and I realise that actually …

Margaret' They are not like you. A lot.

Daniel' Not one of them is the same as me. And the thing is, is, you have got to remember just because somebody has got Asperger's doesn’t mean they have not had a different upbringing and not had, you know….

Margaret' Different experiences.

Daniel' Different experiences and don’t have their own, you know people with Asperger's still have a personality and nobody is the same whatsoever. Obviously some of the issues are the same but the actual varying degrees of what those are unbelievable [kiddie talking in background]. But yes, so I have learnt a lot about Asperger's because of meeting people ..And sort of …

Has it helped you …?

Daniel' It has helped, it has helped my own awareness of myself as well as what other people are feeling and everything. I think my theory of mind and things like that have improved a lot. And just sort of understanding and sort of trying to help people accept, sort of accept their disability because at the end of the day it is you. And to be honest with, if there was one of these sort of cures or anything else, .would you want it, because you wouldn’t be you would you? I mean if the could like ….

Daniel' … sort of very futuristic kind of idea of a cure would be to actually get rid of all the bad bits and keep the good bits. [laugh] Then yes, I would probably want to accept it but other than that I wouldn’t want to get rid of it, because I would lose a hell of a lot as well.

One woman described how it was “a breath of fresh air finding people that would understand me and would accept me”. She attended a parents group because the group for people with Asperger syndrome had mostly men attending and did activities she did not enjoy. One woman talked about how her social life revolved around friends that she had made through running a support group with her partner who is on the spectrum.

A few people talked about how they didn't feel comfortable with the thought of a support group or how there were no groups that met at a time or place that was convenient to them. Russell went to a support group but wasn't entirely comfortable with the social activities. Christopher wasn't confident to attend a local youth support group for people with Asperger syndrome.

Richard, a computer programmer and Sue, a healthcare worker, have been married for over 30 years and have a large family. Ethnic background/nationality: White British.

Richard' There is a group of the National Autistic Society who meet three quarters to an hours drive away, which is reasonably local and I have been there a couple of times. But the meetings I have been to were speakers, talking about the work that is being done and I thought there was some of what they were talking about might be relevant, but not quite.

Sue' I think too, as with a lot of these conditions there is a spectrum. I mean they are called spectrum disorders anyway.

Richard' Yes.

Sue' And somebody like Richard who has got into his fifties and has managed to hold his own to some extent within society doesn’t have such obvious needs to address as somebody who is nineteen or twenty and has much more obvious needs that should be met to help them to find their place socially. To find a job that they can work at, for example, to find the support they need from people who don’t expect the personal interactions that they can’t give. That sort of thing, you know, I mean Richard can hold his own, for example, in a factual conversation. You know, he is intelligent, he has got his degrees, he has held down a job, just about all his working life albeit it in a field that is full of people with Asperger's [laughs]. Because you know, he can work better when he doesn’t have to work in a team situation so he is more focused within his own field. Youngsters who are coming up and having to find their way in that way are going to get a lot more attention in terms of support and the effort that is put in for them, rather than somebody who has basically managed.

You sort of mentioned taking up with other people with Asperger's syndrome. Have you sort of, have you made a conscious effort to do that since your diagnosis?

Not especially. I think more than anything really just from sort of websites and forums, sort of chatting to be people, and you know, get added onto messenger and you know, you sit and you chat, blah, blah, blah. Every so often a particular website, they do sort of like arranged group meet ups. So you are sort of speaking to people on a fairly regular basis and you sort of become friends, but I mean there wasn’t anything that I hugely, consciously pursued. I mean, I think, initially, when sort of signing up to various websites, there was an aspect of, oh my God, there are other people who I can just say what I am thinking and they know what I mean, and when they say things I know what they mean. Oh my God. Oh how astounding.

And I remember for a month or so, just thinking how miraculous this was. That other people, they got you, they knew what you meant. And the same you knew what they meant. So that was sort of astounding, but I think to be honest the novelty wore off fairly swiftly. But from the sort of meeting people in real life and sort of, you know, knowing lots of other people with Asperger's it is not something, I have particularly overly pursued, because if nothing else, just simply because you have a diagnosis the same as somebody else, does everyone with cancer suddenly have an amazing amount in common with anyone else who has cancer? No they don’t. You know people are really quite different and the same with anything else there will be people you like and people you don’t.

“I find it easier to connect to people through writing rather than speaking”
Some people discussed their use of Facebook, internet chat rooms and forums as a form of support. A couple of people moderated forums for people with autism which they enjoyed. Alex is very involved in an online support group for parents and has made friends through this group who come to visit her regularly. Christopher enjoys going on forums for people with autism because it makes him feel he’s part of something. Online communication was preferable for some people because there were no difficulties interpreting facial expressions or body language. They could also use icons such as smiley faces to express themselves more effectively. Some people found it much easier to express themselves online.

Richard, a computer programmer and Sue, a healthcare worker, have been married for over 30 years and have a large family. Ethnic background/nationality: White British.

You said you went on the internet and in chat rooms and things. Have you found that has been quite helpful?

Sue' I only did that for the first what eighteen months after the diagnosis and then I felt that I wasn’t really benefiting from being exposed to a lot of women complaining about their husbands basically, which is how I experienced it as a wife of somebody with Asperger's and it has been quite different for Richard.

Richard' There are, there are quite a number of forums to do with Asperger's. There is one very famous one which is full of women whinging about their husbands and that is what it is for. That might have been the one you found.

Sue' Well I don’t know, I mean I could identify with a lot of what these women were saying, but it didn’t give me any answers, you know, and for a lot of them the answer was, right I need to get out of this relationship. That wasn’t an answer for me so I just stopped it eventually.

Richard' I have been quite active in a forum for Asperger's and their partners. So it is not the wives whinging, it is both and there is quite frequently people, quite frequently women coming on, saying either I have just found that my husband, boyfriend is Asperger or I think my husband, boyfriend might be Asperger. Help! And the attitude of the forum is, you can make a go of it, it is hard work but you can. I found quite often that I can respond to a woman in that position saying, “Yes I know exactly why he does that and I can actually tell you why he does that because that is what I do and now I understand it.” And I think that is where the forum is doing a lot of good.

Do you interact with other people with Asperger's quite a lot?

Richard' Yes.

Is that helpful?

Richard' Yes. I found quite a lot of help with just communicating with other Aspie’s and we are different because it is a spectrum. We are different people. We have something in common, the details are different. And quite often I can get to understand something, possibly by reading a report from somebody who is a lot more extreme in that particular aspect. So okay I am nothing like that extreme but now I know what you are getting at because I do have something of that and that does help with understanding.

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Sex:

Male

Background:

Steve and his wife have one son, aged 9. Ethnic background/nationality: White British.

Yes. I have got a lot of friends on the internet. Well I say I have got lots of friends, my partner says I have got none. But on the internet I have got lots of people that I do write with. People that have gone through the same kind of thing the same experiences and they tend to be people that you can relate more to because of the difficulties that they have and I go on some forums for some parents and may be offer up the Asperger's side of things, may be coping strategies that might work. But they might not be able to see. Not to say that I am the expert because I am not, it is just that it is things that might work for me or my son that may work or may not work for them. So yes, I do about… there are about thirty different forums I write, they are not all autistic forums but its… it is a big part of your life though because it is your life isn’t it, really?

What the interacting or having Asperger's?

Both. I think to interact it is nice to actually I find it sometimes such a relief to actually talk to people, well you don’t talk. People say they talk on the internet. They don’t talk, do they, really? They only type, but when you type to somebody in America or Norway who has got the same condition although they might present differently but they have got the same condition and you can relate to them straight away and whether it is because you have got the same perspective on things that you can actually have this conversation and there is less chance of being misunderstood then may be me talking to you for the next hour where there might be some bits where we may find some communication difficulties. And then I would get stressed and you would probably get stressed because I don’t understand and I it is like every day we are in that same thing every day with people, so it does tire you out. Yes.

One woman was cautious about using internet chat rooms because she felt vulnerable. Oliver had a “fleeting interest” in the Wrong Planet website but lost interest quite quickly, because he feels the spectrum contains such a wide range of people.

Other types of support
Several people said that their family and friends were very important to them (see ‘Family relationships’). One woman, for example, spent every weekend at her parents' house and had a good relationship with her brother and sisters. Another man, who experienced serious difficulties at work, talked about how supportive his parents were both emotionally and financially. A few of the people we talked with discussed how important their faith was to them.

Richard, a computer programmer and Sue, a healthcare worker, have been married for over 30 years and have a large family. Ethnic background/nationality: White British.

Well I don’t think we would still be together if it wasn’t for our faith to put it bluntly. If it wasn’t for the fact that as a Christian I believe that when you marry somebody you are married for life. I would have copped out a long time ago if I hadn’t believed that. And I can well understand the breakdown of relationships when one partner has Asperger's because I can well understand the strain that that puts some people under because you go into a marriage and you have certain expectations. They are not demands, but they are just normal expectations of what you are going to gain from it and if those expectations don’t materialise then it is a big upheaval adjusting to that and finding your way to work round that.

I know it is something that not a lot of people have managed to do I believe. You know, I mean sometimes it is just very simple things that end up being the last straw. Things like it took quite a few years to convince Richard that he should bath more than once every three weeks for example and I still haven’t convinced him that when he has worn his trousers for three days he needs to put them in the wash not back on the hanger.

It is a completely different way of seeing things that isn’t amenable to what you perceive as logic. And you just have to find ways to work round those things sometimes. You think well…. But that is on top of the – well he just doesn’t listen to me anyway situations [laughs]. You know, it is not a matter of he doesn’t listen to me when I am upset so much as it is a constant ongoing, he just appears not to listen to me in the sense of hearing what I have to say and responding and interacting over it on anything. Well at times it certainly seems like that. So without believing that once I had married him, that was it, it was for life, I would have walked out. So I do believe that my faith in God and my place here in this marriage is one of the reasons why we are still together.

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